Nancy O’Dell is telling stories about her mom. The host of Entertainment Tonight revels in the opportunity to share what she can about Betty Humphries, a retired teacher with whom Nancy spoke every day. Her voice—much the same as it is on the show—is a mix of Southern-belle charm and broadcaster clarity, with a dash of familiarity that makes it seem like you’re catching up with a dear friend. “I called her on the way to work, sitting in L.A. traffic,” she says. “That was our time.”

So when Betty lost her voice in 2006 (she was hoarse at first, and eventually she couldn’t even whisper), it forced a change in those daily talks. Nancy’s father, Leonard, would moderate the chats between mother and daughter, reading the handwritten notes Betty, sitting next to him, would use to exchange information with her daughter. All the while, Nancy and her family were trying to figure out why her mom’s voice was failing, why she’d been having trouble swallowing food and why she was becoming increasingly frail.

About a year later—just after the June 2007 birth of Nancy’s daughter, Ashby—Nancy was visiting her mom in Myrtle Beach, SC, and ran into a family friend who had once been her mom’s doctor. “He asked me how long her voice had been gone,” Nancy recalls. “I told him she’d been tested for Parkinson’s disease and several other illnesses, but she hadn’t received a diagnosis. Then he asked if she had any other symptoms. When I mentioned the swallowing, he immediately said we needed to have her tested for ALS—Lou Gehrig’s disease, a degenerative neuromuscular disorder for which there is no cure.”

A desperate search for treatmentEver the reporter, Nancy launched into research mode and flew her parents to Los Angeles to meet with neurologists at the MDA (Muscular Dystrophy Association)/ALS Center at UCLA. On Nov. 1, 2007, Betty was diagnosed with ALS, and the family learned that patients usually die within two to five years of their diagnosis.

Nancy researched the disease tirelessly, trying to get her mother admitted to clinical trials that might offer life-extending treatment. Unfortunately, “by the time she was diagnosed, her breathing capacity was already too compromised,” Nancy recalls, wistfully.

Nancy, her husband, Keith Zub­chevich, and Ashby shuttled back and forth between their Los Angeles–area home and Myrtle Beach. “There were about 15 trips back and forth in an eight-month span," she says.

“It was hard to not be able to talk the way we used to,” says Nancy. “But my mom got to be around Ashby. Sometimes we’d just sit on the couch, put our arms around each other and watch a TV show together.”

Then, just eight months after the ALS diagnosis, Betty was gone.

Betty’s legacy of caring lives onAlthough it felt like the family’s darkest hour, it was also a faith-filled moment. “It drove home the point that God gives us only what we can handle,” says Nancy. “In a way, he gave me a gift, because my mom wasn’t diagnosed until Ashby was out of the newborn phase, and we all got to enjoy that time together. It was the most glorious and also the most difficult time in my life.”

Nancy immediately signed on to be a National ALS Ambassador for the MDA and launched Betty’s Battle (bettysbattle.org), a foundation that raises funds for ALS research and helps educate families affected by the disease. She has also cohosted the organization’s iconic telethon for three years in a row. In 2011, she helped raise more than $60 million.

Other families affected by ALS frequently contact Nancy for information on the disease. “I share as much information as I have,” she says. “And then I refer them to the MDA. It helps me feel like I’m doing something. At a certain point, you feel like you have to do something like that so that the person close to you didn’t die in vain.”

Nancy’s work continues her mother’s legacy of caring for others. “She was involved in volunteer work in South Carolina,” says Nancy. “She was one of the most selfless people.”

Nancy’s top 5 caregiving tips

Reach out for resources Contact a national advocacy group for the disease your loved one is battling. “From the moment we received the diagnosis, the Muscular Dystrophy Association was there to help us navigate the disease and its treatment,” says Nancy. Advocacy organizations can also help you find a local support group.

Enjoy the time you have“One of my mom’s doctors said something I didn’t want to hear,” says Nancy. “He said, ‘We’re all going to die, but we don’t always know how. The best thing you can do is to make the most of the time you have left.’ I took his words to heart, and I’m grateful for the time my mom and I had together.”

Nourish yourself“For months after my mom’s diagnosis, I didn’t take time to go running, which helps clear my head,” says Nancy. “Also, although I ate as well as I could, my diet was far from perfect.” Feeling depleted, she returned to her healthy habits about a month before her mom passed away. “I realized I needed to take better care of myself so I could be there for my daughter,” Nancy says.

Let others help“My aunt stayed with my mom when my dad was working,” says Nancy. “My mom-in-law would take care of Ashby so I could coordinate my mom’s care."

Verify your online research“I admit I looked up almost everything about ALS on the Internet,” says Nancy. “It can be terrifying, so be sure to run everything you read by a healthcare provider."